I’m not sure who was more nervous on Maxwell’s first day of school, him or me. I remember driving down the winding country roads that chilly August morning like it was just yesterday. …
I always wondered how I would handle Maxwell reaching preschool age, this is the age still most vivid to me from little Patryk’s life. When dropping Maxwell for his first day of school I can remember being excited, but overly consumed with how I would even get him to exit the car….
Just wanted to write to you all this morning…One year ago today was one of the scariest and darkest days I can remember since losing little Patryk. There was such fear while not knowing what was happening to Maxwell….after testing, three full tonic clonic seizures, rage type reaction to first seizure medicine administered, doctors were telling us that his MRI showed a gray area, heterotopia, which is a abnormal area in the brain where in utero tissue formed slightly abnormally. Many people are born with it and never suffer a seizure in their lives, but it is also a common finding in seizure patients. So it means something and it doesn’t…what it does tell us is there is a possible reason for the seizures, helping to calm our nerves that what was happening to Max was different from Patryk’s unknown neurological complications. Doctors assured us they see no similarities in the two cases and we spent five days in the hospital doing testing and medication changes. We went home and things behaviorally took a turn for the worst…….
Pulling up to the entrance of the Women’s and Children department of Central Dupage Hospital took me back to all the times I stood there previously, not one of those times was I left with a happy memory. So, immediately when pulling up the front doors to deliver the care packages I was hit with a huge wave of emotions, I felt happy and intense grief all at once. I’m pretty sure this was a healing moment for myself, to be back under such drastically different circumstances. When I asked a staff member how many families the PEDS ICU currently had, all I could do from that moment was hold back my tears….
I can hear your child crying as I console mine to sleep; I can hear you crying at night while holding back my own tears. I can hear you scream for help as your child’s condition gets worse; I can hear you thanking the doctors for everything they are doing. I can hear you argue with your spouse as your pain is causing you unbearable stress. I heard everything around me while in this place I never wanted to be and when I left my heart was still broken for everyone of you….